1. PSC and Your Child

2. Coping with PSC

3. Coping with PSC
Depends on age but “knowledge is power”. Understanding what is needed demystifies and allows for increased control.
If the patient is symptomatic, it entails visits and hospital care and medication treatment and surgeries
A child with PSC often minimally symptomatic and it is hard to keep focus on a “silent” disease
Fear can paralyze

4. Children are both Fragile and Resilient
Beginning at about ages 10 to 12, children begin to grasp the complex ways that things can cause or be a factor in a disease or disability. Some are more mature than others. Most want to have their “life” back
Every year check out what the child understands about the illness or disability, medications, limitations, and outcome.

5. Inform yourself and your child.
Listen
Talk
Seek others with conditions and issues with or without PSC (family members or other children )
Encourage ownership of the condition, the questions, the inquiries, the requirements for health care and for setbacks.
Listen.
Inform yourself and your child.
Seek others with similar conditions.
Allow for ownership creating order, discipline and control

6. One Form of Independence
Basic Self Cares: cooking, laundry, etc
Housing
Healthcare
Education
Employment
Finances, budgets
Transportation

7. PSC related
Knowledge of condition, Past Medical History Diagnosis, Dates of events
Medications
Names, purpose, dosage, allergies
Insurance Consequences of changes in coverage
Self advocacy
Who to contact, when, why
Lifestyle choices Consequences different from peers

8. Post liver Transplant Consequences of mistakes can be catastrophic
Rejection and graft loss high in this age group (due to transition or just due to age related behaviors is unknown)

9. Transition and Coping Knowledge of medications Adherence
Independence/self-responsibility
Decision-making capability
Knowledge of medical condition
Appointment scheduling
Lerret, et al. 2012

10. Barriers to transition
Immature patient
Developmental variation
Parent uncomfortable with independence
Parent unable to let go

11. Additional barriers
Insurance issues (including lack of coverage for dual visits)
Adult providers not willing/able to accept pediatric LT recipients
Physical location of adult provider/ new medical system
Pediatric provider: Lack of time to address, difficult to identify adult provider, difficult to cut ties with patients/families
Adult provider: lack of time to address, poor communication from pediatric provider, different medical record system, inadequate knowledge of “pediatric” diseases

12. Structure of Transition
Structure of outpatient appts, identified liaison person
Parent-free portions to appts through adolescence
Peer support groups
Education sessions over time
Take into account gender, individual circumstances, location of adult post-transfer medical provider

13. Key Points Transitioning patients to adult care is a PROCESS
The process should be started YEARS before transfer
And continues AFTER transfer
Use RESOURCES available
Recognize process must be INDIVIDUALIZED for maximum success